The less you do....

Posted , 2 users are following.

Hello everyone,

Ever since the covid-19 pandemic hit I've been at home. I don't have a job now, no kids,

no partner and because of covid, no social obligations. I noticed that I've actually been

feeling better. However the symptoms are still there and whenever there is a busier day

I still feel exhausted, like I have the flu. So I was wondering if it is normal for patients with

cfs to feel better the less they do?

Grts,

Kat

1 like, 3 replies

Report / Delete

3 Replies

  • Edited

    Yes!

    So something i came across when i was diagnosed with ME/CFS was the suggestion of a graded exercise program as 2 years building up to burnout i had lost all strength and energy from no exercising and high mental strain. Turns out it can be really damaging! I hope you've been able to speak to a CFS professional, because they do have some resources that can help deal with energy management and symptom reduction. The most important thing (i think) is to avoid the Boom and Bust cycle, where you overexert (if you feel good maybe, and try to do things that have been neglected) and then crash and spend anywhere from hours to days or a week in recovery. The key to avoiding boom boom and bus is pacing and getting to know your own limitations and recognising your body's feedback about its energy resources as your capabilities, physical and mental, may vary day to day, or hourly. Keeping an activity log (half hourly record of what you are doing every day, and the intensity of the physical or mental toll it takes; for a couple of weeks) can be really useful to help give yourself material to look back and work out what is causing you to crash/how to better pace your activities. Colour coding in traffic lights- red yellow and green according to the energy drain makes it a really useful visual tool. I diaried for a couple of months after receiving my diagnosis when i was learning how to pace myself. All honesty i should probably still be doing it as my pacing has got a bit worse!

    Lots of disabled people i have spoken to since the very first lockdown have expressed that lockdown has been great for them; whether it has lessened their workload, travel, social expectations, i think it has been a really great time for recharging. Personally lockdown (similarly no kids partner or work) has helped me become stronger and my symptoms got to a point where i have been able to slowly increase my mental workload with personal projects and my physical workload with exercise and volunteering. However i should also jsut add that personally, i was building up to a huge crash for about 3 years, finally burnt out for about 6 months and it has taken me 18 months of living at home with no housekeeping, income, shopping, childcare responsibilities on me that i managed to even out and undo the damage done by so long of pushing through and getting worse.

    If you haven't, i would reccommend contacting your local hospital (via your gp? unsure of process right now) and seeing if they have a ME/CFS department; i had approx 6 mo of phone calls with an advisor who helped me work throught different pacing methods and techniques and make sure i had the resources i needed to continue taking the best care of myself i could. For a quick read on pacing technique; https://wames.org.uk/pacingweb.pdf

    Best of luck going forwards i hope this helps you, and feel free to message if youd like for me to find and send some of the resources i was given/share any more in depth info! Take care

    Report / Delete Reply
    • Edited

      Thank you so much for the feedback. I know about pacing myself but I find it very difficult as society (and to be honest also friends and family) expect you to keep going. They shrug it off, call it depression, anxiety or just plain exaggeration. It's really infuriating.

      For me, everything started about 6 -7 years ago. It started with feeling exhausted or like I had the flu by the end of the day. My muscles an joints started hurting, I got abdominal issues and I had to stay at home more often because I was feeling ill. I went to a lot of doctors but they all said nothing was wrong and that I had anxiety. Finally in 2016 (5yrs ago) I crashed. We had traveled to Scotland for my brother's wedding and spent 4 days there.The first day was a very long day. We traveled a total of 10 hrs to get there and got to bed after midnight. The second day we went sight seeing and on day three we went to the wedding. On the final day my family wanted to go for a long walk. I just broke down and ended up sleeping the entire day/night.

      After this breakdown I kept going for another 6 months untill I just couldn't anymore. My GP sent me to a psychologist and there I was diagnosed with high functioning autism (2018) and thought this was why I was feeling like this. After talking to my brother, who was also diagnosed with autism, I figured that this was not the cause since he never felt the way I did. So I went to another bunch of doctors. One of them actually mentioned cfs but never really gave me an official diagnosis. He just sent me to a psychiatrist who, after talking to me for 10min, said there was nothing wrong with me.

      It took me 2yrs (staying at home) to feel a bit better and start my life again. However, not even 2 months in, it started all over again. I kept going because it's what was expected of me. It got worse and worse and then (I shouldn't say this but: thank God) covid hit. Slowly I started to feel better again.

      Now, as vaccines are rolling out and life might get back to normal, I'm feeling a bit anxious. What can I do to get better, to get someone to listen, which doctor should I see to finally get a diagnosis,..? So I made an appointment with an endocrinologist. Hoping that he can rule out anything else or give me a diagnosis. I,m seeing him on monday so fingers crossed 😃.

      Report / Delete Reply
    • Edited

      I’m sorry to hear that your friends and family aren’t receptive and helpful to your condition. I know that it’s exhausting and demoralizing to be invalidated and disbelieved about something intrinsically personal to you. You’re right that society doesn’t make the allowances for disability it should, it’s hard to find help or respite when you aren’t able to work full time to support yourself. I hope that the people around you will come around to recognizing your condition and listening to you, but it sounds like you might have to really put your foot down and create boundaries with them regarding your physical and mental exertion capabilities. It’s tough to stand up to people especially I find when they are close and you would expect them to be on your side supporting you from the beginning. It can be a hard thing for people to accept; sometimes it can come from a place of caring but come out the wrong way, so as much as it shouldn’t be your responsibility or place to educate them, it falls to you anyway.

      I recognise all the symptoms you describe and I have similar, as well as the pattern of crashing and long slow recovery. I also have a high functioning autism diagnosis! (Apr 2019) and for me learning about myself and my neurotype, understanding my feelings, emotions and behaviours has been a large mental effort since diagnosis. I know Autism isn’t the problem for you right now but I'd recommend checking out this stuff; ‘Aucadamy’ on facebook, with Chloe Farahar, Harry Thompson, Tigger Pritchard (the autistic coffee shop); Sam Harris at Bis-Net. They run amazing groups and webinars/chats with loads of neurodiverse individuals and are educating so well on neurodiversity I highly recommend them and love their content! On instagram some of my favourite accounts; ‘The autisticats’, ‘adulting_with_autism’, ‘theautisticlife’. Some are more academically educational some more humorous but they’re great accounts that have helped me along the way, and also sometimes useful for explaining things to other people.

      Please know that it is acceptable, understandable and healthy to be grateful for a break or something that has let up pressure on you and it doesn’t mean that you don’t have compassion or empathy for people who it is harming. You can hate Covid and still be relieved that it’s given you a break that you really needed. I think also that with the pattern you’re describing it's clear that your ‘normal’ is unsustainable for you with your current health problem. I understand and also have some anxiety about things going back to 'normal' but i'm not sure i have any advice for that bit.

      For diagnosis I went through my GP. I had just been given a formal diagnosis of POTS after 2.5 years of hospital referrals and test and was lucky that those doctors also saw my CFS and told me I should get a referral for that. My GP is not always receptive when I ask for a referral so before the appointment I will look online for clinically approved diagnostic criteria/symptom lists, print them and annotate them all over with my own experience, examples of my symptoms, dates, anything I can that’s relevant.

      (https://solvecfs.org/living-with-me-cfs/ - really good article with advice for speaking to doctors and other people

      https://meassociation.org.uk/about-what-is-mecfs/#Part-2

      https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/diagnosis/ )

      With this in hand, I can go into the appointment and say ‘‘I think I have enough evidence of this condition to reasonably request a referral for Assessment’’ If your GP then denies, ask them** to write on your medical file that you have requested referral, that they have declined to refer you and their reasons for declining your request.** I have heard that sometimes this is enough for them to give you the referral, but you need to stand your ground with both statements; taking someone with you as an advocate might be helpful; I struggle with standing up for myself. I was referred to the closest CFS specialist department, where I had a telephone call assessment and received an official diagnosis, then approx. 5 months of follow up care phone calls with CFS specialist occupational therapist. They were really helpful answering all my questions and helping me get used to how I had to manage my energy. Hopefully you’ll be able to access something similar wherever you are based.

      I’m guessing a diagnosis will help you with speaking to other people; it can be very strengthening to know you have professional opinion behind you and makes it harder for people to push aside. Also may be worth seeking therapy if you feel you need it at any point; I think in most of the UK you can self-refer to local NHS therapy providers, where in the service you can ask to be seen by ‘Long-Term Health Conditions’ Department; typically more flexible in appointment times and ‘homework’ expectations; you may get more appointments and they take care to deliver the therapy with your physical health and abilities in mind. I went through this and found it did help, obviously not a magic fix but contributed to my overall improving health. If you choose to do this you may have to try the regular service for a while before they’ll hand you over to long-term health problem therapy service if you say that regular approach isn’t suitable for you. Of course if it is helpful that’s great as well!

      I hope that some of this helps you and that your appointment tomorrow goes well!

      Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up